Treatment Stress?

Hey, this space is yours to rant in.

You’re not going to be chastised here we are here to listen and possibly help you.

The stress we are all under is immense and sometimes crushes one. So don’t worry about saying it how it is.

You can ask your specialist nurse (if you have one) to comment on you’re situation as a go between but you need to talk to someone in the clinical loop.

Good luck

Hello Dave (Carl28 )

I can understand why you need to let off steam.

So HT is on a list of drugs that need to be treated with caution. Your oncology department will have issued a “shared agreement” to your G P practice to give you the HT injections.

Details of your medication should be on your NHS appt with a copy of the shared agreement in your “documents”.

Personally I would be dealing directly with the practice manager - if that isn’t working you need to take out a formal complaint.. 

IF the GP practice was in the wrong with your original diagnosis - make a complaint. If you don’t other men may suffer like you. It’s up to us to route out the bad guys- otherwise more people will suffer.

Best wishes - Brian.

^ Thanks all. I'm going to enquire if I can pay to have the treatment privately, I guess about 500 quid per 12 weeks. Be worth it just to avoid having to deal with the GP Surgery.

Re:"IF the GP practice was in the wrong with your original diagnosis - make a complaint. If you don’t other men may suffer like you. It’s up to us to route out the bad guys- otherwise more people will suffer."

Covered in my Bio. I have it in writing from Practice Manager that they failed to check my PSA results against MY reference levels rather than those of standard non-PCa patients. I have not launched formal complaint because a fellow sufferer who I encountered on the Prostate Cancer forum and who was let down much worse by the same Surgery IS pursuing action. He has copies of my correspondence with the Practice Manager.

I know I should join his action but life is short enough without filling it with battling with CQC etc  -  and the BMA always wins. Nor do I wish to be struck off GP list as a vexatious patient.

See what Monday brings....

Good luck, Dave 

Good afternoon Carl28,my husband never had to get the prescription he just turned up and they booked the next appointment, due to his heart attack he has now been changed to a tablet  that he will start taking next week just 1 tablet aday, perhaps you oncologists could change you to that because of all the problems you are having getting the injection.

All the best Sheena 

Hi Carl, I agree with Sheena. My oncologist agreed to put me on the daily tablets (Regulolix=Orgyovix) from the start (no heart issues but they are better than the injections as a preventative measure). First month picked up from hospital, then my GP put onto repeat prescription. A few clicks on the NHS app each month and they arrive through the post via Pharmacy2U. No stress at all, and no injection site issues. You may want to look into that option.

Wishing you all the best.

David

Yes I changed to Regulolix from Prostate Injection. Just got to remember to take the daily tablet. I've found that my brain fog has disappeared (almost) and the flashes have also reduced. At the end of the treatment they say your testesterone returns much faster and a much lower risk of heart problems although this has to be confirmed. I have AFIB so a no brainer for me. Mine is on repeat prescription.

Cheers another Dave

 Irish Terrier Thanks Sheena.

For over 2 years during and following my RT treatment in 2021 yes I just "turned up"! No hassle. 

But during that time practice taken-over by a much bigger company and now seem to be transferring more and more activity to their massive new all-purpose "treatment and health centre". The care element has disappeared. 

I suffered very few side effects during original round one on decapeptyl and so far also pretty minor, despite also being on darolutamide. Both "for life" (I.e. not long!) so I don't want to change.

Thank you for commenting, good luck, Dave 

^ Thanks all. In no particular order, random "replies".

My cancer nurse specialist did speak with surgery before transferring action to them and we thought it was agreed that THEY would allow appointments to be made 12 weeks into the future and arrange availability of the meds. No clarity as to whether this has been taken on board.

The shared care arrangement/protocol is referenced in a letter from hospital that I can access on NHS, but is not viewable because held by GP! And it is not on my GP patient records.

Not a question of a set course of decapeptyl (or other meds) treatment, non-curative and palliative so simply until death or when fails completely, so probably not long!

I coped well with >2 years of the injections in 2021-2023 (all done hassle free at then practice before it was taken over by a large company) and so far no unacceptable side effects even though now combined with darolutamide so no wish to change.

If tomorrow goes wrong and/or if I get no reassurances re next time, then private seems the way to go.

I have no faith in the Practice Manager  -  doubt will speak to me!

Onward and downward.

• Good luck, Dave 

Carl28 said:

supposed

"supposed". Predictive text?